24 days and counting.....

My apologies (again) for such a long gap between posts. Granted, I have a fair number of excuses that I could use to say why I haven't posted, but in all honesty, I've been kind of dreading trying to sugar coat my current situation to avoid sounding like I'm whining. For those of you who are friends with me on social media, you may have seen that I have been inpatient at USC Keck---- for the last 3.5 weeks. And as much as I would love to report that I'm seeing really dramatic improvements, feeling better, and on my way out of here, I would be lying.

Since my last post, I had another 2 recurrences of the stubborn UTIs, and was inpatient yet again at work after another IVIG reaction. In between admissions and more rounds of antibiotics both at home and inpatient, I was trying to still manage all of my mast cell and angioedema (swelling) symptoms, my online patient advocacy certificate classes, my work at CHLA, and just life in general. My dad, stepmom and brother had a long planned trip to Israel planned, and we all had made ample preparations to ensure that I had a "backup" plan in case my immune system continued to go rogue while they were gone. I did ok for like 2 days, and on day 3, started to have a dramatic increase in my symptoms and stubborn swelling in my lips, tongue, mouth, throat, and eyes. My uncle Marc did a fantastic job of taking care of an monitoring me, and we went to the ER, but stayed in the parking garage because all of my medications finally started to work, and then went home.

The next day, the swelling came back with a vengeance. Yet again I tried all of my home emergency meds, called the doctor, and tried a more aggressive regimen-- nada, so it was off to the ER we went. This time, I was having a really difficult time breathing from the swelling, and they couldn't manage it either. Usually, an epinephrine drip (adrenaline/what is in EpiPens), makes a pretty substantial difference in conjunction with other medications, but similarly to my episode in April in which I had to be intubated (breathing tube placed/on a ventilator), it simply wasn't enough. They were concerned that they would lose my airway, so the ER doctor frantically was calling to larger hospitals in the area with more abundant resources to try to transfer me out. Both of UCLA's ICUs were totally full, and I'm too old to be transferred into CHLA, which ended up being a blessing in disguise. They called USC, but were told that the ICU was full, so the doctor himself called and begged them to take me, and they found a bed in their medical ICU.

I was transferred to here (Keck USC) via Critical Care Transport on the epi drip at about 2 AM on 6/26, and I am STILL here. As the title states-- that makes my stay 24 days so far. I was so scared to be at yet another new facility with physicians I wasn't familiar with because of so many of the traumatic experiences I have had before. Although this is my longest admission yet, with the most treatment-refractory symptoms, pain, and swelling, the care that I have received here has been nothing short of phenomenal, knock on wood. All of the staff and physicians here have been incredibly kind, compassionate, thorough, humble, and willing to go the extra mile to make sure that I have what I need.

First set of lights

However, little progress has been made. Nevertheless, this is not due to a lack of effort by any means. We still have no idea what could have caused this episode, and why it has sustained for so long. The longest I have ever been on an epi drip is about 5-6 days--  I am STILL on the epi drip, which is unheard of for non-heart patients. The rate is down, but we have been at a stalemate at the current rate. Same on IV steroids, which cause the horrible side effects like the osteoporosis, compression fractures, cataracts, etc, but again, no luck in reducing the dose without potentially threatening my airway.

Got pumps?

In the mean time, we have tried additional rounds of IVIG at an even slower rate
before, replaced my extraordinarily low iron, started continuous Pepcid and Ketamine drips on top of my existing Benadryl and epi drips, started a course of oral antibiotics to ensure that there is not any bacterial overgrowth in my gut causing my malabsorption, and found a formulation of the oral chemotherapy med (Gleevec) that I was on a few years ago that doesn't have ingredients I'm allergic to in it. We are continuing all of these treatments, but still, no luck so far. My PICC line in my arm, which is one of the two more permanent central lines/IVs that I had cracked (I also have a port, which. is in my chest under my skin), so I had to have a new one placed in my other arm. They are planning on placing another Hickman next week, which I have had (and posted about) before, so they can remove the PICC.

PICC #6

I still can't believe that I have been in here for more than three weeks. It is so incredibly frustrating and disappointing to see my body totally betray me over and over again, but I am also extraordinarily thankful for the quality of care that I am receiving here, and the fact that I'm able to place confidence in that care is a rarity. I have been continuing to work on my online classes, many many crafts, and other things to pass the time. Both my mom and uncle were extraordinarily helpful while my dad, stepmom and brother were out of town, and continue to do so now that everyone is back. I have also loved having visitors, and appreciative of those who have made the "schlep" out here to see me, since I'm a good hour and a half to two hours away from home. My mom got me some string lights to decorate the room, and I have been adding my crafts around the room when I can too. I have continued to do my diamond art, started some string art, and have been making animals out of the IV vial caps to pass the time. There also has been quite a few other MCAS patients here that I have gotten to meet, which has been cool as well. I also got the fun of being in the hospital for a 7.1 and 6.7 earthquake (which was insane, by the way),

Vial cap art for staff

Pet therapy with fellow zebras

While we continue to do trial and error, we're working on trying to improve my nutrition when possible, and going outside at least once a day to help maintain sanity, and I'll post updates when I can!

For those of you who haven't seen me swell, this is considered to be mild lip swelling.